The Elephant in the Pink Room

October, as I’m sure you’ve noticed by the sea of pink sweeping the US is Breast Cancer Awareness Month an annual campaign to increase awareness of the disease.

How times have changed. Thirty years ago, when I lost my first friend to the disease “breast cancer” was rarely discussed. Women didn’t openly talk about it because it was considered a death sentence. Today, we not only speak openly about breast cancer we talk about living with it, rather than dying from it.

However, while this is good news, approximately 30% of patients with breast cancer will develop metastatic disease. By this we mean cancer that has spread beyond the breast.  Ultimately around 97% of those patients, 40,000 a year, will die of the disease. Yet only about 5% of total cancer research funding goes toward metastatic disease of any cancer type and less than 2% to metastatic breast cancer.

And those women living with metastatic breast cancer, also referred to as stage IV breast cancer, face a unique set of concerns.  It’s the most advanced stage of disease and one for which there is no cure.  But it is considered treatable.  The goal of treatment is to delay the progression of symptoms.

While few programs are devoted to these concerns hopefully this will start to change tomorrow.

National Metastatic Breast Cancer Awareness Day was officially recognized by the U.S. Congress on October 13, 2009, and has been an annual feature on the breast cancer calendar since then.  It’s a day that aims to recognize and raise awareness about the approximately 156,000 U.S. women living with metastatic breast cancer.

While there have been advances in the treatment and management of metastatic breast cancer, the disease continues to end the lives of patients each year,” says Shirley Mertz, board member of the Metastatic Breast Cancer Network (MBCN) and a metastatic breast cancer patient since 2003. “Women living with this disease need it to be recognized, no longer ignored and misunderstood. We need more resources and support as we try to live each day while being in constant treatment.”

MBCN is a national, independent, nonprofit, patient advocacy group dedicated to helping people living with metastatic breast cancer.

The organization raises awareness of metastatic breast cancer by putting a public face on the metastatic experience. By giving those living with stage IV disease a greater voice and visibility in the breast cancer community, the medical community, the research community, and with the public-at-large.  Their education and advocacy programs help to end the experience of isolation, ease the fear of the disease, provide information to enable patients to participate in decision making with our medical team, and defy the myths of stage IV breast cancer.

Their driving mission is to take the metastatic breast cancer population out of the shadows and have them be acknowledged, accepted, and heard.  So join with us in recognizing National Metastatic Breast Cancer Day, this Saturday.  Maybe together we can move this elephant.